White-Black Disparities in Family-Centered Care Among Children with Autism in the United States: Evidence From the NS-CSHCN 2005–2006

2011 ◽  
Vol 11 (4) ◽  
pp. 297-304 ◽  
Author(s):  
Guillermo Montes ◽  
Jill S. Halterman
Keyword(s):  
United States ◽  
Children With Autism ◽  
The United States ◽  
Family Centered Care ◽  
Centered Care ◽  
Family Centered

scholarly journals Parents’ pandemic NICU experience in the United States: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Ashlee J. Vance ◽  
Kathryn J. Malin ◽  
Jacquelyn Miller ◽  
Clayton J. Shuman ◽  
Tiffany A. Moore ◽  
...  
Keyword(s):  
United States ◽  
Emotional Distress ◽  
The United States ◽  
System Level ◽  
Free Text ◽  
Family Centered Care ◽  
Parental Presence ◽  
Centered Care ◽  
Family Centered ◽  
Parents Experiences

Abstract Background Prior to the COVID-19 pandemic, parents of infants in the Neonatal Intensive Care Unit (NICU) frequently reported high levels of stress, uncertainty, and decreased parenting confidence. Early research has demonstrated that parents have had less access to their infants in the hospital due to restrictions on parental presence secondary to the pandemic. It is unknown how parents have perceived their experiences in the NICU since the beginning of the COVID-19 pandemic. The purpose of this study was to describe the lived experience of parents who had an infant in the NICU in the context of the COVID-19 pandemic to inform healthcare providers and policy makers for future development of policies and care planning. Methods The study design was a qualitative description of the impact of the COVID-19 pandemic on parents’ experiences of having an infant in the NICU. Free-text responses to open-ended questions were collected as part of a multi-method study of parents’ experiences of the NICU during the first six months of the pandemic. Participants from the United States were recruited using social media platforms between the months of May and July of 2020. Data were analyzed using a reflexive thematic approach. Findings Free-text responses came from 169 parents from 38 different states in the United States. Three broad themes emerged from the analysis: (1) parents’ NICU experiences during the COVID-19 pandemic were emotionally isolating and overwhelming, (2) policy changes restricting parental presence created disruptions to the family unit and limited family-centered care, and (3) interactions with NICU providers intensified or alleviated emotional distress felt by parents. A unifying theme of experiences of emotional distress attributed to COVID-19 circumstances ran through all three themes. Conclusions Parents of infants in the NICU during the first six months of the COVID-19 pandemic experienced emotional struggles, feelings of isolation, lack of family-centered care, and deep disappointment with system-level decisions. Moving forward, parents need to be considered essential partners in the development of policies concerning care of and access to their infants.

scholarly journals Content and Communication of Inpatient Family Visitation Policies During the COVID-19 Pandemic: Sequential Mixed Methods Study (Preprint)

2021 ◽  
Author(s):  
Joanna Hart ◽  
Amy Summer ◽  
Kuldeep N Yadav ◽  
Summer Peace ◽  
David Hong ◽  
...  
Keyword(s):  
The United States ◽  
Mixed Methods Study ◽  
Factorial Survey ◽  
Family Centered Care ◽  
Centered Care ◽  
Community Protection ◽  
Willingness To Recommend ◽  
Family Centered ◽  
Scientific Rationale ◽  
Care Support

BACKGROUND Inpatient health care facilities restricted inpatient visitation due to the COVID-19 pandemic. There is no existing evidence of how they communicated these policies to the public nor the impact of their communication choices on public perception. OBJECTIVE This study aims to describe patterns of inpatient visitation policies during the initial peak of the COVID-19 pandemic in the United States and the communication of these policies to the general public, as well as to identify communication strategies that maximize positive impressions of the facility despite visitation restrictions. METHODS We conducted a sequential, exploratory, mixed methods study including a qualitative analysis of COVID-19 era visitation policies published on Pennsylvania-based facility websites, as captured between April 30 and May 20, 2020 (ie, during the first peak of the COVID-19 pandemic in the United States). We also conducted a factorial survey-based experiment to test how key elements of hospitals’ visitation policy communication are associated with individuals’ willingness to seek care in October 2020. For analysis of the policies, we included all inpatient facilities in Pennsylvania. For the factorial experiment, US adults were drawn from internet research panels. The factorial survey-based experiment presented composite policies that varied in their justification for restricted visitation, the degree to which the facility expressed ownership of the policy, and the inclusion of family-centered care support plans. Our primary outcome was participants’ willingness to recommend the hypothetical facility using a 5-point Likert scale. RESULTS We identified 104 unique policies on inpatient visitation from 363 facilities’ websites. The mean Flesch-Kincaid Grade Level for the policies was 14.2. Most policies prohibited family presence (99/104, 95.2%). Facilities justified the restricted visitation policies on the basis of community protection (59/104, 56.7%), authorities’ guidance or regulations (34/104, 32.7%), or scientific rationale (23/104, 22.1%). A minority (38/104, 36.5%) addressed how restrictive visitation may impair family-centered care. Most of the policies analyzed used passive voice to communicate restrictions. A total of 1321 participants completed the web-based survey. Visitation policy elements significantly associated with willingness to recommend the facility included justifications based on community protection (OR 1.44, 95% CI 1.24-1.68) or scientific rationale (OR 1.30, 95% CI 1.12-1.51), rather than those based on a governing authority. The facility expressed a high degree of ownership over the decision (OR 1.16, 95% CI 1.04-1.29), rather than a low degree of ownership; and inclusion of family-centered care support plans (OR 2.80, 95% CI 2.51-3.12), rather than no such support. CONCLUSIONS Health systems can immediately improve public receptiveness of restrictive visitation policies by emphasizing community protection, ownership over the facility’s policy, and promoting family-centered care.

Patient- and Family-Centered Care in the Emergency Department for Children With Autism

PEDIATRICS ◽  
2020 ◽  
Vol 145 (Supplement 1) ◽  
pp. S93-S98 ◽  
Author(s):  
David B. Nicholas ◽  
Barbara Muskat ◽  
Lonnie Zwaigenbaum ◽  
Andrea Greenblatt ◽  
Savithiri Ratnapalan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Children With Autism ◽  
Family Centered Care ◽  
Centered Care ◽  
Family Centered

Patient- and Family-Centered Care in the Emergency Department for Children With Autism

2020 ◽  
pp. 337-342
Author(s):  
David B. Nicholas ◽  
Barbara Muskat ◽  
Lonnie Zwaigenbaum ◽  
Andrea Greenblatt ◽  
Savithiri Ratnapalan ◽  
...  
Keyword(s):  
Emergency Department ◽  
Children With Autism ◽  
Family Centered Care ◽  
Centered Care ◽  
Family Centered
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